My Non-support Support Group

Three years ago, I had the privilege to attend the Parkinson’s Foundation’s Women & PD Initiative. At the end of the conference, we were asked to reach out to other women with PD in our communities. Some of the women chose to hold a conference in their city for women with Parkinson’s. Others formed support groups or other activities for women with PD.

From the beginning, the women who came said that they did not want this to become a monthly “gripe” session.

I decided to reach out to other women to get together on a regular basis for what eventually became what we lovingly call a “non-support support group”. Instead of a traditional support group format, where there is an occasional speaker, but more often a facilitator led discussion, we have no format. From the beginning, the women who came said that they did not want this to become a monthly “gripe” session. They wanted to get to know other women with PD in a non-threatening environment.

We often have a speaker or activities to help us live better with Parkinson’s. So we have had sessions where we boxed, we danced, did yoga, made art and drummed. We have had a sex therapist speak to us. A PD psychologist, a speech therapist and more. Sometimes, we invite spouses or the men from my boxing group, depending on the topic of the day. When American Ninja Warrior, Jimmy Choi, came to Los Angeles, we had him join us for an interview about his journey with PD, followed by an obstacle course and a potluck BBQ.

This past week, we had a holiday celebration, with both women and men, with a private docent led tour of The Notorious RBG: The Life and Times of Ruth Bader Ginsberg exhibit at the Skirball Cultural Center, followed by a tea. When I tried to facilitate a short discussion at the tea, no one was interested. After all, that is for support groups. They were just happy to do something stimulating and informative and get together with friends.

The bottom line is that sometimes, we just like to get together and have fun or learn something new. Many of us know each other through this group or from other activities in the PD community of LA. So when we do meet, it is more often because of a special opportunity that has come to us that is different than what most support groups or PD conferences can offer. And of course, there is always food. We don’t meet as often as we did at first because, well, we are just busy women with full lives.

But something magical has happened. Many of us have formed close friendships with others in the PD community. Because LA is so spread out, women have come from places an hour or more away just to see the friends that they have made through this group. Women who understand what they are feeling without even talking about it. Women who were newly diagnosed and afraid to meet others with PD have joined us and discovered that there is a welcoming community for them that is there to help them on their own personal journey with Parkinson’s. Most importantly, they have gained confidence from seeing that their diagnosis is an opportunity for them to do new things, not an end. Many have discovered ways that they can live better with PD. And others have created their own ways to reach out to others in the PD community.

Because of this group, I spent a lot of time at the World Parkinson Congress in Portland with two of the women who eventually created Soaring with Hope for PD. We have all become very close friends. Although I do not live close to them, we try to get together regularly for lunch or at other local PD events. They reached out to me to help spread the word about Soaring with Hope from the beginning, and I am thrilled that this has become a global project that will be one of the highlights of the upcoming WPC in Kyoto.

So I want to thank all of you who have joined me on this fun ride for the past three years. We will continue to get together to learn, to share and just have fun. We may not meet as often, but when we do, I can guarantee that it will be time well spent.

Cynthia, you should contact the organizers and ask if you can help,organize a follow up meeting or form a Facebook group for the attendees. It is a great way to engage in your PD community. You will find that you are not the only one who wants to keep in touch.

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Disclaimer

Dear Readers: I love to see your comments and get your emails as we share our collective experiences. I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctors.